Beyond the Komen controversy

Over the past few weeks, as Susan G. Komen for the Cure revoked funding for Planned Parenthood, then reversed itself, I watched through the scrim of something that, while less newsworthy, was, to me, no less significant: the death of Rachel Cheetham Moro, the 42-year-old writer of the blog Cancer Culture Chronicles.

I never met Rachel. I don't know what she looked like. I don't know where she lived. We had one of those newfangled, disembodied relationships, conducted through Twitter and Facebook. Still, her writing was so vivid, her reporting so dogged and our interchange so meaningful that I feel like we truly were friends.

Rachel had metastatic cancer -- the kind that spreads beyond the breast. And guess what? It turns out that despite the money flowing to breast cancer charities -- particularly Komen -- the death rate among those with metastatic disease has not budged in 25 years. What's more, the actual number of women (and men) who die of breast cancer today -- about 40,000 annually -- is greater than it was in the 1980s.

That's right: More people die now than did three decades ago. True, the overall breast cancer death rates -- as a percentage of those diagnosed -- have dropped, but that's in part because mammography is really, really good at finding and diagnosing, for instance, DCIS, which means ductal carcinoma in situ. DCIS is Stage 0 cancer, which will probably never become invasive.

So although I was heartened by Komen's turnaround -- on Rachel's behalf and, as a 15-year survivor of breast cancer myself, on my own -- it's not enough. Not nearly. In fact, that controversy ought to motivate us to dig deeper, to push harder to understand how the money so generously and, frankly, blithely donated to breast cancer causes is spent. Consider, for instance a new report by Reuters on how Komen distributed its funds in 2011: 15 percent went toward research -- roughly half the percentage allocated in 2008 -- even as the foundation's revenue went up. The research allotment also lagged behind fundraising and administrative costs.

As for the rest: 55 percent -- more than $200 million -- went toward "awareness education" and promoting mammography (that includes the 12 percent that subsidizes screening of underinsured women, which is where the Planned Parenthood grants fell). Mammography, rather than a cure, has always been Komen's focus, despite its name. The organization has been accused of overselling mammography's benefits in the face of scientific data on its efficacy. It's not that the test is useless, of course, but research clearly shows that its value is more limited than once thought. Does mammography save lives? Sometimes, though not necessarily -- and "caught early" does not always make breast cancer less deadly. That's because cancer is complicated.

Komen, however, at least in its public presentations seems to prefer its cancers simple. It focuses on what Gayle Sulik, author of "Pink Ribbon Blues," calls the "she-roes" narrative: stories of warriors in heels who kick cancer's butt (and look fab doing it). She-roes say what people want to hear: that not only have they survived cancer but the disease has made them better people and better women. It almost goes without saying that they do not contract late-stage disease, nor do they die.

And so, even as pink ribbons have proliferated, even as breast cancer has become polite dinner table conversation, the actual lived experience of women with advanced disease -- women like Rachel Cheetham Moro -- has been pushed to the margins.

From all of this, one can draw two conclusions. First, the same pressure that made Komen change its policy on Planned Parenthood needs to be brought to bear on its other policies, such as its indiscriminate partnerships (remember those pink buckets of KFC?). Alternatively, we could take our donations elsewhere. There are plenty of other, less-well-known groups doing worthy, effective advocacy on breast cancer, groups that don't shy away from looking objectively at the science of screening, that more aggressively push investigation into causes of cancer (such as potential environmental links) and refuse money from corporations whose mission, products or policies are antithetical to women's health.

My fear is that the wounding of Komen, which has been breast cancer's sacred cow, will turn women and men against the cause. I hope that doesn't happen. Instead, I hope that those who protested the Planned Parenthood move keep going, demanding -- insisting -- that rather than just making people feel good, the organization actually does good.

Peggy Orenstein is the author, most recently, of "Cinderella Ate My Daughter: Dispatches from the New Girlie-Girl Culture." She wrote this for the Los Angeles Times.